My Baby had a Stroke – A Mom Copes

Allison Bemiss lives in southern Kentucky with her husband, Daniel, and two sons, seven year old Elijah and two year old Jonah. Just after Jonah’s first birthday, the family learned he was a pediatric stroke survivor. He suffered an in-utero stroke resulting in right sided hemiplegia. Prior to deciding to stay at home with Jonah, Allison served nine years in education as a teacher and education consultant. She writes under the pen name, Allison Jewell. Shine On is her debut novel. Rise & Shine, the sequel to Shine On, will be published in July. Read about those beginning moments when Allison first learned that her son was a perinatal stroke survivor.

It started with a MRI.

Beeping,

Clicking,

Roaring

in my ears.

As my precious twelve month old

lay strapped inside the machine,

heavily sedated.

My eyes moved in a triangle from my baby, to my husband, to the two workers behind the thick glass, and then back again to my sweet boy. I felt the tears dropping on my arms. I didn’t even realize I was crying.

After an eternity, that I am now sure was only a half hour or so, the technicians left the glass and one entered the room.

“We’re finished. Are you heading upstairs?” She asked with a blank face.

No. We hadn’t planned to go upstairs to the doctor. The plan was for our doctor to call us with the results. And when I told her, her face fell and she shook her head.

“I think you need to go on upstairs; so, you can talk to the doctor.” She said quietly.

And just like that all of the air was sucked out of the room. The rest of the day was a blur. I remember vaguely the doctor’s description and illustration. I remember asking how this had happened. I remember the look on my husbands face. I remember the embrace from the doctor. I remember it was my birthday.

How was it possible that my baby had a stroke?

A STROKE… before he was born?

He had suffered for a year and none of us knew.

How had this happened to my baby?

Why couldn’t it be me?

Why couldn’t it be me?

Why couldn’t it be me?

It must be a dream.

It wasn’t. We made a plan, found doctors and more therapists. My sweet boy made even greater gains. He improved each day. I quit my job to stay home and help him. That was one of the most difficult and best decisions I’ve ever made.

Things seemed to be going well on the outside… but inside, I was struggling.

Plagued with doubt, fears, questions.

What if…

He never walks?

He cannot learn to use his hand?

Kids at school make fun of him?

I don’t find him the best doctors?

and

How will..

I explain this to his brother?

Explain this to him?

I tell others?

Will I tell others?

I met a friend for coffee one day and finally opened up to the fact that I hadn’t really been sleeping. I’d wake all hours of the night with these thoughts, and worries. My friend, who knows me well, suggested that I write it out.

But at that time, I couldn’t. I couldn’t write about the MRI. I couldn’t write about his diagnosis. I couldn’t write about my worries or anything related to the words pediatric stroke. It was still an open wound.

I told her with teary eyes, that I just couldn’t. Not yet. Someday. Maybe.

“No,” she said. “Just write something you enjoy. Something to take your mind off things for a while. Didn’t you mention a 1920’s story once? Go write that.”

Write? With everything I had going on in my world she thought I could write some period piece about moonshiners? She was off her rocker. I smiled and shrugged the suggestion off. But a few days later when I realized I was still spending time thinking of what a crazy idea it was to crack open the keyboard and get lost in the roaring twenties… I decided maybe she was right. It was the middle of the night. I’d awakened with a “What will I do if he can’t carry his lunch tray at school?” sort of worry and I decided to head to the computer. I decided to turn my creative worries into creative writing.

I would give myself one chapter. No one would have to read it. Surprisingly, I found that I did feel better. And a few chapters in, something surprising happened. A little boy named Max walked into the story… straight from my heart. He had a slight limp and had a difficult time moving his right hand. I instantly knew his history. He was the age of my older son but he, like my younger son, was also a pediatric stroke survivor.

My life threaded into the pages of Shine On in a way I had never intended. Walter, Max’s grandfather, shared my fears and worries. Emmie, the heroine, reassured him things would be fine. It was like all parts of my subconscious were playing out in the subplot of my story. It was a much healthier way for me to work out my fears. I wrote the first draft of Shine On in just under six weeks.

I wrote the sequel to Shine On, Rise and Shine, while my son had the first round of Constraint Therapy. Ironically the same thing happened. The plot of the second story involves Emmie getting back in “the business” in an attempt to help raise money for Max to visit a special hospital in Louisville. I never planned on having this story parallel my life but it happened. Although, it is not the main plot of the story, I am not sure I would have ever finished the story had it not been for Max’s character’s entrance into the pages.

Now we are taking our son to an intensive CIMT camp in a different state. I have decided to publish Shine On in an effort to help pay for the costs of his camp expenses, travel, etc… Rise and Shine will be out in July.

Now, as I sit here waiting to go into physical therapy with my sweet Joe, I realize this is my journey. My journey. My story. Our story. We each have different pages and different ways to process our child’s diagnosis. Writing helped me and now it is helping to send my child to the therapy camp he needs.